What makes a day a good day to you?
Karina Sturm: Good days in life with a disease like Ehlers-Danlos syndrome are days when my pain is so well controlled that I can participate in life without the pain keeping me from various activities. On a – I always rather call them – better day I manage all the to-do's on my list without being completely exhausted afterwards or even having to experience the negative consequences of the effort the next day. On a better day, I get up in the morning relatively refreshed, get out of bed before 10 a.m., and can accomplish several tasks throughout the day; I can eat without feeling sick or having a reaction to the food; I can walk, bend over, and do household chores without being flat for a week afterwards. On a good day, I might be able to meet friends, write an article, and do all the things that make my life a happy life.
Which auxiliary means or daily living aids are indispensable for you?
Karina Sturm: Assistive devices are one of the main pillars in life with EDS, along with physiotherapy, pain management and lifestyle adaptations. There are, for example, bandages and orthoses for the unstable joints, mobility aids such as rollators, walking sticks, wheelchairs and crutches as support in everyday life, and then of course the aids that are not even officially considered aids, such as the purchase of new mattresses, special pillows, or even such things as a vacuum cleaner robot, which for me, for example, is one of the best ten purchases for my chronic illnesses, because it saves me a lot of pain.
The best aid of my life so far is a recumbent bike. Due to my illnesses/disabilities, I have been unable to participate in sports activities for a very long time. Likewise, I have always been a very competitive person, meaning that before I became ill, I had constantly competed in volleyball or otherwise with other people. I have never lost this love of sports, even though I tolerate very little activity now. I have not been on a bicycle for 12 years. My back pain, spinal instabilities, and balance problems have meant that I can barely sit on a regular bike for ten minutes. A fall would have fatal consequences. Because I walk practically everywhere, but my walking radius is limited, for many years I could only walk around my apartment. Since a few months I have a recumbent trike and suddenly my range of motion has increased tenfold. In addition, the bike allows me to strengthen my muscles while reducing pain due to the comfortable position. I can hardly put into words how it feels to ride down a long, sloping hill and feel the wind in my face while exploring new places on my own and without help. A whole new life.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Karina Sturm: There are many things that need to change for people with chronic illnesses and invisible disabilities. But one of my biggest wishes as a chronically ill woman living with an invisible disability is that the people around us – especially the medical professionals – come to understand that many chronic diseases/disabilities cannot be seen. But that does not mean that they are not there or that those affected "imagine" their illness. In that context, at the same time, I would still like to see more talk about medical gaslighting and gender bias in medical circles, because I think it's all related:
Prejudices against young women who don't look sick often lead to medical gaslighting as a consequence. And only if we as affected people talk openly about it and the doctors listen to us, it can be ensured in the long run that especially women with invisible diseases/disabilities are not constantly misdiagnosed and treated. Incorrect treatment leads to physical and psychological damage that sometimes cannot be reversed and that accompanies us throughout our lives. None of this should be necessary...
Which assistive device would urgently need to be invented and/or improved?
Karina Sturm: Hm, I don't even know if I would say that new aids would have to be invented for me – and I can only speak for myself, because every person with EDS has very different needs. Actually, there are super many great potential everyday helpers. What I think is the bigger problem is that a lot of what is an assistive device for me is not considered an assistive device in our current healthcare system, making them prohibitively expensive. The quality of life of someone with EDS depends a lot on how much money they can invest in medical equipment that is not covered by insurance. And that's unfair. Participation in life should not depend on earnings/financial resources – especially since most chronically ill people are not necessarily rolling in money either. Let's take my recumbent bike as an example again. That has not been a cash benefit. Such bikes quickly run into four to five figures. Most people with disabilities can never afford that, or only after many years of saving by doing without other essential things in order to set priorities. Really everything in our lives is about prioritizing because we can never buy all the things we would actually need for the disease and we can never do all the things we would like to do. So I saved up for this bike forever and then ultimately even got it covered by the insurance. By the way, this was the first time that I received any major service, which is not part of the standard catalog, from the insurance company. I am incredibly happy about this, but at the same time I know that this is a great privilege which is certainly not granted to every person with a disability.